The Gift of Life: Could You Do It?

This Thursday, February 1st,  is the day that we celebrate as Wendy’s Kidneyversary, the anniversary of her kidney transplant, a day that changed all of our lives forever.  But we got the call about the kidney and she went into the operating room the day before, January 31st. That’s the date on all of the records. She just  didn’t come out of the operating room until early morning, February 1st.

So why do we celebrate on the next day?

Let me explain.

I can’t celebrate a day that another mother lost her child.  I just can’t do it.  Her child’s death helped my child’s life, and that is a wonderful, wonderful thing.  But I can’t celebrate on that day.  I give that day to the mother of the child, the fourteen year old boy, to mourn.  That is the worst day of her life.

And I cry with her.  I mourn.  I’m crying now as I write this. Imagine, just *imagine* losing your child.  The baby you held.  The boo boos you bandaged.  The first grade Pilgrim plays and the fifth grade choir.  Eighth grade with awkwardness and anger and smelly clothes. Even the bad days, wouldn’t you take them, than the alternative?  Wouldn’t you?

Imagine hearing that your child has died and being approached, delicately, by the doctors about donating his organs.  All the lives that could be saved.  Could you do it?

Could you?

This is Wendy’s 9th year with her kidney.  She has done inspiring things. Her life is a testament to organ donation.  In years past, I have written letters to the mother of Wendy’s kidney donor, and I have written about all of the things that this kidney has done, all of the countries it’s gone to and all of the things it has helped Wendy to do to succeed.

This year, though, I’m asking you, the person reading this, to become an organ donor, if you aren’t one already.  It takes a minute. The link is here.

Don’t make your loved ones have to make that decision, of organ donation, on their worst day.

Make the decision for them.  Give the gift of life.

And please help me to celebrate on February 1st.  Nine years!

Thank you!




A Short Story About Germs.

Once upon a time there was a little girl who started at a brand new school in a brand new state and she had lots of health problems. She had so many health problems that the principal and school nurse wrote a letter home to parents of the other children telling them that if they sent their children to school while they were still contagious, that they would likely put that little girl in the hospital.

On Back to School Night, as the parents came into the cafeteria to hear the announcements before going to meet their child’s teachers, the school nurse again stated that there was a child in the school who was immune suppressed. She took medications that made her more susceptible to childhood germs. She got sick faster and harder, and if she had a stomach flu or a temperature of 101 or higher, she instantly had to go into the hospital for three days.

The parents were concerned. You could hear a pin drop in that auditorium, where the parents sat on tiny chairs, listening and thinking. It was something to consider. How sick was sick enough to send to school? When do they keep their child home?

The nurse explained. “Your child needs to be fever, diarrhea and vomit free for a full 24 hours before you can send your child back to school.” She continued, “If you have any questions either err on the side of caution, or call me and ask.”

The child’s mother was also sitting in the audience, silently wondering how all of this information would affect her child. Would it change the way parents would approach play dates? Would her child be judged and ostracized? At least, for now, her child was anonymous. No one knew who the very sick child was.

That changed in the next five minutes. The parents were released to the hallways, to look at the freshly decorated bulletin boards and the highly waxed floors. They they found their proper classrooms and sat at the too-small desks in too-small chairs, waiting for the new teachers to introduce themselves.

The teacher began by saying that her class was the class with the very sick child and the very sick child had a name, and it was Wendy.

Wendy’s mom gasped.

The other parents nodded, thinking. Wendy’s mom tried not to look around. She couldn’t believe that her daughter had been exposed. She wondered if it was illegal.

But the next day, Wendy had her first play date.

Wendy’s mom was cautiously optimistic. Maybe, just maybe, this was going to be ok.

Parents really took back to school night to heart. They were very careful about sending their child to school if he or she was sick. They would take extra care to call the school nurse with symptoms to see if they should send their child into school. When in doubt, they kept their child home.

And the most amazing thing happened. Not only did Wendy stay healthy, but the other kids in the third grade class did too. While other classes were hit hard with stomach viruses and influenza and strep throat Wendy’s class was an oasis. And Wendy only went into the hospital once that year. Amazing.

What is the lesson? The school health care rules to keep kids safe, to stop the spread of germs, is good for all kids. But it is especially important for kids with compromised immunity. Those are kids who can’t protect themselves so they have to rely on good luck and dedication. Scientists call this herd immunity.

Thomas Jefferson once said that Eternal vigilance is the cost of freedom. For kids with compromised immunity, that freedom is from the hospital. That vigilance is from the community.

This story has a happy ending. If you have a child in school, you can be the hero of the story too. Keep your child home if they are sick. Save other children from becoming sick. Keep a immuno compromised kid out of the hospital.

It’s not a fairy tale, it’s science.

Baby, you’re growing up.

Dear Wendy,

You’re about to turn fourteen, and I can’t believe it.  Sometimes it feels like you’ve lived two lifetimes in that body of yours.  You have always given us a run for our money.  You were born on the coldest day of the year in 2004, the Obstetrician was a doctor I had literally met once before.  My doctor was sitting shiva, so I went with the new guy.

Like all births, it didn’t go as planned, but it was a relatively easy delivery as deliveries go, and you popped out healthy and perfect. Ten fingers, ten toes, and a loud strong voice.  Your dad and I were thrilled and exhausted, and we went home as a family a few days later.

But something was up, you weren’t a strong eater and you didn’t nurse well.  I also didn’t know what I was doing, and the long story short, I called the pediatrician and said, “I know we’re not supposed to come in until Monday but I think something is wrong.”  Turns out, I had developed mother’s intuition.  You went back into the hospital for a week, as a “failure to thrive” baby.  Nothing was wrong necessarily, they kept you to put some weight on you after a lumbar puncture and sent us home again with a prescription for some drug to help me get my milk back, and a strong suggestion to supplement with formula.

You’ve never been easy.  As a toddler you were willful and headstrong, testing the boundaries of everything all the time.  You had so much energy that we called you an “Energy Vampire” because you only seemed to get stronger as we flagged at the end of a long day.  You have been, and continue to be, my greatest challenge as a mom.

But as birthdays go, you’ve had some good ones and some bad ones.

On your first birthday, you received your bear Teddy, the companion through all of your hospital stays, which is good, because you’ve had over 200 of them.  I have washed and mended Teddy more times than I can count, but I am grateful that you have him.

On your fourth birthday, you were in the hospital.  You had to be readmitted because you were on too many oral medications and your stomach couldn’t handle them all.  You were super weak and we asked all our friends to wear green and send us pictures because green was your favorite color.  The hospital staff adopted a penguin at the New England Aquarium in your name, so you could go and visit him once you got well enough.  You named your adopted penguin Poppy, and you had a plush animal that looked like him.  Your cake had yellow roses on it, and no candles because candles aren’t allowed in the hospital, so I ran down to the gift shop and got colorful plastic frogs to decorate all over the cake.  You celebrated with a little girl who had a brain tumor from Canada.  We eventually, a few months later, got to go to the aquarium to see the penguin.

On your fifth birthday, we were waiting every moment for word that your kidney was going to arrive.  You wanted a pool party, in the middle of January, so we arranged to have your party at the pool at Vermont Technical College. Your friends came and we had pizza and cake and played musical chairs, besides the swimming of course!  You were super sick but you loved that birthday, just being a normal kid with your friends.  Except you were on 14 medications that you took in 2 hour increments around the clock.  Your kidney (whom you call Frank) arrived 22 days later.  He was a little late to the party.

On your eighth birthday, you wanted to have a Fairy Princess Tea party, so we rented out the Three Bean Cafe on a Sunday (they were normally closed) and everyone got wings and tiaras, while you drank “tea” and ate cake.  Even the barista Rex wore a crown to celebrate the day.

You missed your tenth birthday, which was going to be going to an indoor waterpark, but you had pneumonia and had to go into the hospital.  They let you out pretty quickly because everyone in the hospital had the flu, but you were there for a few days under observation.

For your 11th birthday you wanted to go ice skating with friends and then for a fondue dinner, which we miraculously pulled off with no problems.  It was freezing cold, but you had a good time, and I think it might have been one of your best birthdays.

Now here you are at 14, almost as tall as me, hair dyed purple, playing your ukulele all around the house.  Life has not been easy for you, but you have been a vibrant presence in the lives of others for as long as I can remember.  You are a good big sister.  During the last snowstorm, while I was taking a shower, your sister came in from playing in the snow and you made her hot chocolate, just like that.  You are fantastic with little kids, collecting them like the Pied Piper wherever you go.  You’ve recently gotten your first job teaching soccer to toddlers, who adore you.  You are a good team mate and a good friend, being attentive to them and being a good player on and off the field.  You’re a good daughter, too, even though we sometimes butt heads, but all moms and daughters do. I just want you to know that I’m so proud of the young lady you’ve become.

Tonight is a good example.  You went to yoga with your friends, and got a ride home.  You realized that you forgot your glucometer at the place which was locked up tight. You told your dad, which I’m sure was not easy on you, and you went all the way back together to get it.  Then, you went to swim practice, even though you were going to be late.  That takes heart, kid, and you’ve got a huge one.  I have checked your blood sugar in twelve different countries, on boats, trains, in cars and planes.  I’ve changed your pod in Italian churches and at soccer games.  I’ve given  you back up injections at Swim meets and on mountain tops.  And you just go with it, you roll with the punches.  You’re the most resilient person I know.

I can’t wait to see how you grow up and use your talents as you become an adult.  You have such a vibrance that’s impossible to miss.  Last summer, when we did StoryCorps, I told you that you reminded me of Harry Potter, because the worst part of his life, losing his parents and getting his scar, happend in the beginning of the story and there was so much more that he did, and that happened to him and as a result of his ations.  I still feel like your illness as a three year old was only the beginnning of your story.  I can’t wait to be a part of the rest of it.

Happy Birthday, Wendy.  I love you.